Having another child when your first has ASD?

[Prol]

Hello everyone.

My son, who is 7, has recently been diagnosed with ASD (autism), although we were told by the psychologist that he would have been diagnosed as 'aspergers' previously. He only got the diagnosis as I pursued it privately, school didn't even think it was necessary and said he doesn't really need any extra support there, he won't be eligible for an EHCP or funding or anything like that. I write this because DS doesn't struggle with the majority of the classic autism symptoms and many people (friends and family) describe him as an easier child than most his age. His main difficulties are in social communication; for instance, understanding when someone is finding him boring, or annoying, or interacting with his peers. He has no associated learning difficulties, in fact he is incredibly clever and well above average for his age. He is very independent - makes his own breakfast, lunch, washes himself, organises his homework.

My partner, who is not DS's dad, things he is just 'eccentric' and a bit 'geeky', and really doesn't think he needs the label all that much. He's a firm believer in taking everyone as an individual and just thinks DS is his 'own person' and should be treated as such. He is very much in favour of us having a child of our own. I am a little unsure as I am quite concerned about us having a child with severe ASD - I don't think I could cope. Has anyone had a child with ASD - then gone on to have another (or with a different dad). How did things turn out for you?

@DrRuthGalloway

Well that's not 'sole care* is it

I should go back and look at the criteria?

If only I had a wider understanding of autism.

The trouble is, I based part of my knowledge on the fact of being an autism specialist psychological professional in charge of autism strategy for a large education provider in a major city, from having been part of an autism diagnostic team for the last 19 years, and from having worked with literally hundreds of families with autistic children over the last 25 years and spoken at multiple professional and family conferences over the years about autism and neurodiversity.

That, and having an autistic son, father, sister, and neice.

I kind of thought that was enough tbh....

@Fundays12 If you don't mind me asking, how old is your DS1 now? It's hard to know what the future will look like, and how different / more challenging DS is compared to other 7 year olds... as I have only ever experienced him. He definitely has his challenges and struggles, but I don't know if it's 'over and above' because I don't spend extended time with other children his age IFYSWIM.

Same
The thought never crossed my mind
My middle autistic child also has medical issues and I wasn't put off having another child. For me it was 'what will be will be'.
My older brother is severely disabled with autism and other issues so I'm totally used to having special needs in the family. His care will probably fall to me and my younger brother when my parents are gone and that's fine.

. She does have a support worker 2 hours a week who helps with shopping and cleaning, again paid from for her inheritance.

Also I missed this bit which just backs up what I was saying. If an adult needs a support worker, then something is amiss. Don't pretend autistic people cope just fine when your own niece/cousin (whichever it is this time) actually does have support workers. That's not the definition of someone who is managing their life without issue.

@DrRuthGalloway

I based part of my knowledge on the fact of being an autism specialist psychological professional in charge of autism strategy for a large education provider in a major city, from having been part of an autism diagnostic team for the last 19 years, and from having worked with literally hundreds of families with autistic children over the last 25 years and spoken at multiple professional and family conferences over the years about autism and neurodiversity.

Oh did you? It doesn't show.

And yes, autistic people find lots of things hard. Mostly interacting with NT systems that fail to accommodate autistic brains, thinking styles and sensory needs or the common need for alone time in a world that values team work and sociability.

Autistic people also experience joy, love, connection, hope, excitement and deep flow states of contentment.

You can't simply dismiss autistic experience as one of suffering.

Because I don't agree that autistic people have shit unhappy lives and are always a burden?

You sound like a lovely person

It sounds like you have a wonderful partner, who loves your son and sees the best in him, and who wants a child with you. I don’t know anything about the hereditary nature of ASD but is it possible it came from your DS’s dad and therefore you would have a much lower risk of the same diagnosis with a second child with a different father who has no ASD traits? It makes your decision a lot different to someone deciding to have a second child from the same gene pool.

If she was NT and had a cleaner 2 hours a week, would that mean something was amiss and his or her life was terrible?

Why do we have double standards in interpreting NT support vs autistic support?

Well you have taken the 'suffering' wildly out of context and lept on it like a rabid tiger. The post you picked it from was where is was suggesting people should consider how the autism affects the autistic person, not the parents or siblings, when deciding whether to have another child or not. That's all.

@lolil eh?!

I haven't said it is or isn't OK to choose not to have another in case the child is autistic.

I havent failed to realise one of those things is autism.

I am aware autism isn't the same for everyone.

I agree it's fine to consider these things.

Give it up. Like really. Your whoever family member has gone from needing care to having a little support to just being like a NT person with a cleaner

@Lalosalamanca

Ok sorry I didn't mean to imply you said anything

I have 5 dc. 3 have autism, 1 is being assessed for ADHD and 1 has learning difficulties. When I got pregnant with dc5 my dc2 had sensory issues and my dc4 had some medical issues. So we didn't have the kind of information that you do. However we knew when we were ttc dc1 that dh has aspergers syndrome. So we knew it was likely that one or more of our dc would have autism. We were also very aware of the chances that we could have a child who had more severe autism and would never be independent. But we are all one accident or illness away from being disabled.

None of my dc have non-verbal autism and none of my autistic dc have learning difficulties. My dc1 is very bright academically although he has a lot of struggles under the surface. My dc2 tried to kill himself when he was 12. My dc5 seems to be unhappy a lot of the time and I can't seem to fix it for him. Sometimes it's hard. Sometimes it's very hard. But also sometimes there is joy and I hang onto those times.

I think from what you have said your chances of having another child who has asd would be low.

NT or not, do you want 2? How would you cope with 2 as a single mum? I'm only asking as it is always a possibility (not just through divorces before anyone pounces!) But you need to think of how you would cope day to day, with and without a coparent. Its ok to decide you want to stick with 1.

But from your post I wonder how much dad would pursue help and support of needed? Or would it be you pushing for a diagnosis if there were concerns or would he bury his head in the sand? X

"The most important factor that needs to be considered here is the actual child. Should parents choose to possibly bring a child into the world who will suffer their whole life? No. It's a hard no from me."

You said that the potentially autistic person would suffer their whole life. You said that. You said that the possibility of an autistic child was a hard no from you. I agree that the child's needs, not the siblings', should be a core part of family planning. I don't agree that it's better that a child who might be autistic would inevitably be better not born because they will "suffer their whole life".

Now you are nitpicking about my neice/cousin (I am deliberately not divulging exactly as she has a right not to be recognised on an anonymous board) and making out like because she has two hours a week of cleaning and shopping support she is clearly not coping in her life.

Because I disagree with your bleak view about autistic lives doesn't make me a liar or a bad professional.

Do you think, as a professional, arguing with an autistic person, about autism, on an anonymous forum is a reasonable thing to do? After I explained the context of the word, and offered up many other words, you are still going? I don't o see what you are getting out of this. I'm able to recognise for me, it's nothing, so I shall bow the fuck out.

I sincerely do hope you are bending the truth about your profession though, because I would expect a shit load more understanding from someone with such credentials.

Where did you previously say you were autistic?

I simply don't believe that as a general principle, autistic people's lives are so bad that it is better that they didn't exist.
If that makes me bad at my job, and bad at coexisting with the autistics in my life, then so be it. An autism specialist who thought autism was a dreadful curse and that autistic people should not be born would be horrific.

I am not rainbows and butterflies. I know things can be hard.

I continue to believe that every life has value.

@RealBecca I do want more than 1 DC. I just have reservations as DS's ASD doesn't appear to impact his life that much, he is very happy and is very independent, not requiring much care. I can very much envisage him being independent later in life. I know I would find it hard having a child with a severe learning disability, and obviously, already having one with a diagnosis, the greater probability I am to have another. I don't know if there has been much research done on outcomes of subsequent children from another father. I could cope day-to-day with two as a single mum, I could have 3x DS and still manage fine. (Managing sounds odd, I love my life and time with DS!)

My partner is quite anti-label, if I'm honest. He thinks ASD, ADHD, ODD have become a bit of a catch all to label anyone who isn't the 'status quo' and a bit different. He knows lots of people, and has lots of friends, who are quite clearly mildly autistic, ADHD, who live happy, independent lives. He thinks everyone should just be treated as an individual, with their own wants, struggles, curiosities, strengths. He doesn't view DS as disabled and thinks labels should be for people who's conditions are disabling and life-limiting e.g. they are deeply unhappy, or not able to live some form of independent life.

Hi @Prol you're reservations are completely understandable and sound like the normal concerns that sensible parents have before deciding to have another child - not knowing the future. I think if you know you can handle it alone that's incredible (shamefully I am a mum of one and I struggle some days even with incredible support, so perhaps some projecting my own anxieties there- it makes me happy that you are so bright :).

So what I'm reading is that you def want no 2 and you can cope alone regardless of a second child with health concerns.
But your OP says that you dont think you could cope. I'm not picking holes but those are two different answers. So what are your concerns and can you speak to anyone professional for reassurance about if the "what if no2 has severe disabilities" becomes a reality. Because it could be for anyone, even if a child is born healthily. Perhaps you could book an appointment with your GP to explain your concerns, ask about the likelihood for no2 and ask what the care package would be if that were the case- is respite available? Day clubs? Carers?

It sounds like your concern is a very natural "what if" but you are understandably scared stiff.

@RealBecca Thanks so much for your reply. I think talking to a healthcare professional is a really good suggestion. It's having a severely disabled child that concerns me and what I think I would struggle with, doing it alone or even with support. x

My eldest is autistic (as am I, I now know), and I have two children. The youngest is neurotypical - very sociable and chilled out - and he and his sister get on brilliantly. They have a lovely relationship. I was worried about my eldest when she was 7, as she was struggling at school, but at 11 she’s thriving - loving her hobbies, doing well at school and getting quite independent. She’s a good influence on her younger brother in terms of working hard, trying activities etc, and in return he is protective of her at school and understanding when she finds things hard. I love them both to bits and wouldn’t change a thing.

@DIYandEatCake Thanks for sharing, your children sound lovely😁